Assessing the health care needs of adolescent and young adult cancer patients and survivors.

Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors. Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items. Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends. These findings provide oncology professionals and young adults with insight into the others' values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer.

Zebrack B ，Bleyer A ，Albritton K ，Medearis S ，Tang J ... -  《CANCER》

Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer.

Most children diagnosed with cancer are surviving into adulthood but are not receiving adequate or appropriate follow-up health care. However, to the authors' knowledge, there is little literature published to date exploring potential barriers to long-term risk-based follow-up care for young adult survivors of childhood cancer. In the current study, using a modified Delphi technique, young adult cancer survivors identified barriers to utilizing appropriate follow-up care and offered suggestions for ways to enhance health care in this young adult population. Major barriers to health care were found to be a lack of knowledge on the part of both physicians and survivors regarding long-term health issues related to cancer. Suggestions to enhance care included self-advocacy training for survivors and advanced training for primary care physicians who may treat childhood cancer survivors as they transition into adulthood. The results of the current study are consistent with reports that young adult survivors of childhood cancer need or desire information regarding their medical histories, psychosocial support, and social advocacy.

Zebrack BJ ，Eshelman DA ，Hudson MM ，Mertens AC ，Cotter KL ，Foster BM ，Loftis L ，Sozio M ，Oeffinger KC ... -  《CANCER》

Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN).

Partners of cancer patients typically provide the majority of patients' emotional and physical care. Partners may be profoundly affected by the cancer and may experience ongoing supportive care needs across the survivorship continuum. Research has been restricted by a lack of psychometrically evaluated measures and in this study, a self-report measure of partners' needs was developed and empirically evaluated. Questionnaire items generated from a qualitative study were constructed into a 47- item unmet need measure (Cancer Survivors' Partners Unmet Needs measure, CaSPUN). The psychometric properties of the CaSPUN were evaluated in 212 partners of patients who had been diagnosed with cancer 1-11 years earlier and were currently disease-free. The CaSPUN was modified to include 35 unmet need items, 6 positive change items and an open ended item. The CaSPUN demonstrates a high level of acceptability, internal consistency and construct validity, although test-retest reliability was moderate. Factor analysis identified five discrete factors: (1) Relationships, (2) Information, (3) Partner Issues, (4) Comprehensive Care and (5) Emotional Support. The CaSPUN permits the identification of long-term supportive care needs in generic populations of cancer survivors' partners and will assist with the formulation of recommendations regarding required supportive care services.

Hodgkinson K ，Butow P ，Hobbs KM ，Hunt GE ，Lo SK ，Wain G ... -  《PSYCHO-ONCOLOGY》

Critical issues in transition and survivorship for adolescents and young adults with cancers.

The majority of children, adolescents, and young adults diagnosed with cancer will become long-term survivors with many potential years of life ahead of them. Their journey from health through diagnosis and treatment to survivorship involves multiple transitions. Transitional services that should be available throughout this journey include health-related education, health surveillance and screening, management of cancer-related complications, and psychosocial support relevant to their developmental needs. Survivors require lifelong care that focuses not only on the medical risks arising from their cancer therapy, but also the psychosocial, educational, and vocational implications of surviving cancer. Because many community health care providers lack familiarity with the health risks associated with childhood or adolescent/young adult cancer, survivors must have sufficient health knowledge to advocate for risk-based cancer-related follow-up; the provision of a treatment summary and care plan at the conclusion of their cancer therapy is an important tool for facilitating this process. The availability of resources for survivors varies by geography, health care system, and survivor characteristics. Adolescents and young adults who receive their care outside of a pediatric cancer center have particularly limited access. The limitations in cancer center resources (along with survivor preference) strongly suggest that the long-term care of survivors will need to be shared between the cancer centers and primary care providers in survivors' communities.

Nathan PC ，Hayes-Lattin B ，Sisler JJ ，Hudson MM ... -  《CANCER》

Adolescents & young adults: issues in transition from active therapy into follow-up care.

Thompson K ，Palmer S ，Dyson G 《-》